Tuesday, 21 May 2013

Crohn Together

The 19th May 2013 was World IBD Day. ('Inflammatory Bowel Disease' to the uninitiated). It was a day where people from all over the World were helping in any way they could, big or small, to raise awareness of our conditions, and some cases in trying to raise money for IBD related charities.
Crohn's Disease and Ulcerative Colitis are two of the most well known and life-changing bowel conditions around. Of course when I say 'well known' what I mean is that you will be aware of them if you are a doctor or have a family member or friend with the illness. Or have it yourself. Otherwise, these conditions (incredibly prevalent across the UK alone) are still a bit of a mystery to many. That's why these events are so crucial. We need to make people aware that what we are dealing with is not shameful, should not go unspoken and that our strength is something to be admired not pitied.
As I've mentioned previously in the blog I had no knowledge whatsoever of Crohn's Disease until I was told I had it. The terror there was that I was told one minute I had Appendicitis and was getting my appendix out, then the next the news hit that I actually had and incurable illness I'd never even heard of.  Bit of a difference and pretty difficult to get to grips with.
Amongst other things, World IBD Day is prominently an opportunity for people suffering with these conditions on a daily basis to be heard by the wider world. To speak out about the trials and tribulations we have to endure day by day and for the remainder of our lives. The day is a chance for us to clear up misconceptions about our badly behaved bowels, and make others see that we are still people, not just patients. It's also a chance for us to take part in events all over our own parts of the world and involve those close (or not so close) to us too.
For my small contribution to the big day, I was invited to go to Birmingham to take part in an IBD Day Symposium. An event set up and organised by patients, for patients. It was the brain-child of Claire Hunt (a Crohn's patient and massive fundraiser for Crohn's Disease all across Britain and beyond) and John Bradley (the author of Crohn's tome 'The Foul Bowel' and Crohn's sufferer of over 20years). I was flattered to be asked and honoured to be involved in an event with such Crohnie Royalty ;)
Our event was held in Birmingham Children's Hospital and speakers were invited to share their experiences of living with IBD in their own words. I was asked to talk about 'Reaching Out' with my disease and in particular, blogging about Crohn's Disease.
It's a subject I'm obviously well versed in, but my public speaking skills leave a lot to be desired.. I put in plenty of practice before the event; trying to slow my Scottish speed-talking down to below 500mph and in attempting to remember I'd have an audience to look at and not just my feet.
After travelling down to Birmingham and meeting everyone I was much more at ease. Some of these people I'd chatted to and learnt from for several years and up until then only seen in tiny Twitter box form. Lots of fun. I found myself completely inspired by the speakers and in particular the younger ones. They have had so much to deal with at such a young age and yet show how strong they are and how they are looking to their futures with nothing but positivity and hope, in spite of an incurable illness. Only a stone-hearted person could fail to be encouraged and humbled by their stories.
My talk went down well and apparently no one could tell my knees were knocking and hands were shaking the whole way through. It gave me a heap more confidence and encouraged me to continue writing. The event was a success, everyone had a lovely time and left feeling a lot more positive about their own condition, or that of their loved ones. I left feeling emotional but comfortable in the knowledge I'm not and never will be alone in my fight.
I want to help people like myself who are coming to terms with their illness. It's a struggle for everyone, whatever age you are diagnosed. It's a life changing time and can be utterly terrifying. It's important to remember there is always support out there in one form of another for everyone.
You don't have to look far to find it either. You've found this blog so you're already on the right track ;)


  1. what can i say, your talk was amazing on sunday afternoon

  2. What a wonderful blog-have just read it to Chlo-busy revising for exam tomorrow-THANK YOU!She had a wonderful day and we both so inspired by you and the other speakers-great for Chlo to have older perspectives as she one of the oldest at The Childrens now.Thank you and keep up the fab blogs. x PS You would have never known you were nervous!

  3. lovely... says it all we're all crohnected now!

  4. Thank-you so much all of you! And thanks for the lovely feedback on my talk! My knees were a'knockin' so just as well I was behind a plinth ;)